We knew that the week ahead would be emotionally torturous for the grown ups aware of the situation. Thankfully Benjamin was treating it with the excitement of an extended Christmas break (though he LOVES school and has said on a number of occasions that he misses his friends and teachers) and Ella was happy to follow her big brother's lead.
We're lucky to have Mimi, my mother-in-law, living less than ten minutes away and my parents drove from Ottawa to lend extra pairs of hands and to act as happy distractions for Benjamin and Ella when we needed to take moments away to fall apart. I can't remember a time where I've ever felt so many opposing emotions all at once. Supported and alone. Terrified and comforted. Overwhelming sadness and joy.
One of the ways I've coped during the waiting periods is to throw myself into planning something fun and special for our family so when I told Benjamin that I'd spoken with Santa and that our Christmas morning would be January 3rd I distracted myself with wrapping the last of the gifts, setting up the living room with the kids (cookies and scotch for Santa and carrots for the reindeer) and table setting for our holiday meals with Grandma, Grandpa and Mimi.
My parents were staying with my aunt and uncle who happen to live across the street from Mimi so the three of them arrived dark and early on our family's Christmas morning. By the time Benjamin and Ella were ready to head downstairs their grandparents were outside his bedroom, ready to follow.
Being the sweet and enthusiastic kid that he is, Benjamin was equally excited to help his little sister open her gifts as he was to open his own. Watching the two of them together brought us all so much joy but as the morning went on I felt the sadness creep in and the cruel game of "what if..." starting playing in my mind. If only there was an off switch.
I did my best to focus on being present with our littles, showing Benjamin how to use his new camera from Santa (his apple doesn't fall from my tree) and folding whatever wrapping paper was salvageable as a means to hide the tears that started to brim every now and then, threatening to overflow down my cheeks.
As usual, Mimi owned the meal portion of the morning. Not only is she an amazing cook and baker but she truly enjoys it. This year she made Christmas buns with icing and holiday-themed gummies for our little guy with the sweet tooth (again, apple to my tree). Benjamin was over-the-moon that he was allowed to have candy for breakfast and as soon as he'd finished his gummy he began negotiating for more.
Shortly after breakfast my dad left to go back to our family cottage and Mimi headed home as she was feeling the inkling of a cold coming on.
Ella's afternoon nap was spent setting up and playing with the Cars car wash gift that Benjamin had opened earlier that morning. My mum and I took the lead on the set up as David cringed in the corner. He's an avid reader of instructions and neither my mum or I even bothered to take them out of the box.
I kept thinking how normal this all felt: Benjamin speaking in a loud, excited tone as he narrated the storyline of the cars driving in and out of the car wash. Me reminding him to use his indoor voice so as not to wake Ella. Him forgetting moments later as he jumped, did his "fast feet" dance while waving his his arms in the air. When he's excited it extends from the top of his head, out to to his fingertips and to the bottom of his toes, something that's been happening since the day he was born. In these moments of normalcy it was hard to believe that this bright light our ours could possibly be as ill as the doctors suspected.
That night, after the kids had had their bath, been read and sung to and were sleeping soundly, I sat on our living room couch wrapped in my mum's arms, my face in my hands and bawled. I wished over and over that it was me potentially facing the fight of my life, not him. I was listing the "what ifs" that had run through my mind earlier that day between sobs and as I heard them out loud each one broke my heart more than the last. I had been trying so hard not to put the worst case scenario out into the universe but in a time of so many unknowns, where everything felt out of my control, I crumbled.
Once I'd let them out I knew I had to let them go, I had to be strong and positive for Benjamin, Ella and David. I knew that remaining optimistic would go a long way. I believe the power of positivity is unexplainable but so very real.
In the two days that followed both Mimi and I were completely laid out from the cold we'd caught from Ella, the one she'd caught from Benjamin which kicked off the whole COVID Christmas in the first place. The silver lining there is that Benjamin's sniffles may very well have saved the rest of us from testing positive which would have made the previous week of hospital visits all the more complicated on so many levels.
I spent one day in bed thanks to my mum being in town, felt better the next but overdid it so suffered through the whole next day with body aches, chills and depleting our home's Kleenex supply while caring for our kids.
We'd been told to expect to hear the results of Benjamin's biopsy about a week after his surgery which would have been Thursday, January 6th. Under normal circumstances, my phone is nearly always on silent because the audible notifications have a tendency to bring me out of the present and onto my screen, but for the past six days I'd kept it on as loud as possible. By Wednesday every time my phone would ding or vibrate I'd jump and fumble for it. Still no word from the hospital.
Exactly seven days after Benjamin's biopsy we got the call we were anxiously awaiting and simultaneously dreading. My mum was outside playing in the snow with Benjamin and I had Ella inside with me. I asked the doctor to please hold on while I got my husband in the room, put the phone on mute. I then threw open the french doors to the backyard, called for my mum to come take Ella, yelled down to the basement where David was working to come up and raced up the stairs to our bedroom, taking the stairs two at a time. Once David and I were both upstairs in our room I unmuted the phone and in my best calm voice I asked the doctor to please go ahead.
As the oncologist talked, a wave of relief washed over us. 'Relief' is perhaps a strange word to use as you read this next sentence. What Benjamin has is not a sarcoma but instead a rare disease and type of cancer called Langerhans Cell Histiocytosis (LCH), This disease affects ~40 children per year in Canada, ~20-25 of whom are seen at Sick Kids by some of the world's most experienced LCH paediatric oncologists.
LCH is very serious and if left untreated it can lead to the worst case scenario. However, in discussing Benjamin's case the oncologist said that his LCH is "unlikely to be life-threatening" and even called it "quite treatable". We were doubtful that these were turns of phrase that were casually tossed around by oncologists at Sick Kids which gave us reason to hope, reason to be optimistic.
With my phone on speaker on our bed, David and I hugged each other tightly, our tears flowing freely. Relief. For a brief moment I think we had forgotten that the doctor was on the line until he started speaking again. Being a numbers guy, David asked the oncologist where we were sitting on a scale of 1 to 10, 1 being the worst case scenario and 10 being the best. After a brief pause we received an "8 out of 10". While we've got a long, hard road ahead of us, and given we thought we were facing a sarcoma, the LCH diagnosis was better than the scenario we'd been preparing ourselves for.
We were told that the next step would be for Benjamin to get chest x-rays, a skeletal survey (images of all of the bones in his body) and an ultrasound of his abdomen. This set of images would allow his healthcare team to assess if the LCH was living quietly below surface anywhere else in his body. We were told that once the team had those images they should have all of the information they would need to give us a complete diagnosis and to form the best possible treatment plan for Benjamin.
We asked about the most common treatment plan for this type of cancer and were told it could be surgery and/or chemotherapy. If chemotherapy was to be part of the plan the dosage would be considered mild by comparison to what we would have been looking at had this been a sarcoma.
After hanging up the phone we felt a bit lighter. This was the sort of news we'd been hoping for, the sort of news we'd willed to be delivered. I'd even promised the universe I'd take Benjamin to see the snakes at the zoo if he would be ok (if we haven't met you may not know that for me, that is the ultimate promise as I have a very real snake phobia).
We've been working very hard to be grateful and to focus our attention on the silver linings:
We have a diagnosis that's been called an "8 out of 10"
We've heard the oncologist use phrases like "unlikely to be life threatening" and "quite treatable"
The chemotherapy, if that is part of the treatment plan, will be mild in comparison to that for other types of cancer
There's been no impact to Benjamin's vision
We're in one of the best children's hospitals in the world
We have some of the world's most experienced LCH oncologists on Benjamin's case
Without an accidental kick to the face, the LCH may still have been living quietly below the surface and we wouldn't have known to investigate, get a diagnosis or implement a treatment plan
The doctor we saw at the Just For Kids clinic urged us to go straight to Sick Kids and coached me through how to advocate for Benjamin
The few family members who knew what was happening up until this point helped us with childcare, made sure we were fed (even though our oven broke on Christmas Day and our new one wouldn't arrive until the end of January), offered prayers, positive thoughts, shoulders to cry on, words of encouragement and were essentially our lifelines during this incredibly difficult time
While at this point very few people outside of our four walls knew what was going on, we could already feel the outpouring of love and support that has since grown, and continues to. You've all helped us immeasurably as we gear up for the fight to end Benjamin's cancer.
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